Better Screening, More Cases, or Both?

March 29, 2012

I’ve noticed that when people speculate about the causes of autism, behavior disorders, or learning disabilities, the conversation often leads to the question of whether there are more cases these days or just more diagnoses.

One Response to Better Screening, More Cases, or Both?

I was at Children’s during the height of “vaccines cause autism” insanity. It has, though, left a dreadful artifact: lower vaccination rates — and greater vulnerability to, and incidence of, vaccine-preventable disease.

When it comes to the debate over “more cases or better diagnosis,” one thing that’s always stuck in my craw is the absence of any historical analysis of data surrounding institutionalization. And that may be because the task is simply too daunting and the records too incomplete and arcane by today’s standards. The absence of historical data leaves a gap in what we know now about the prevalence of autism.

Think about the history of institutionalization — a practice that was the norm even in my lifetime. Up ’til the late ’60s, it was what parents — good parents — routinely did. It was considered the humane thing to do — for the child and for the family. The child was gone, perhaps occasionally visited during a discreet trek on a Sunday afternoon.

In my tiny hometown, two neighborhood families placed children in a state-run institution called “Northern Colony.” Every state has a long record of operating many such institutions, nearly all of which have been closed or repurposed to meet other needs. (“Northern Colony” is still open. Renamed and scaled down, generally serving a much different population such as vent-dependent adults and a comparatively tiny number of aging, and severely, mentally disabled people.)

Their former names tell us a lot about the mindset of the day. They were homes for “the feeble-minded,” “imbeciles,” “mongoloids,” “the retarded” and so on.

The sheer numbers of such places and their occupants would stagger the mind nowadays.

They were absolutely huge, each filled with hundreds of children and adults. In retrospect, we’ve learned their conditions were often anything but humane.

They were populated by kids who grew into adulthood institutionalized. Many were born with chromosomal anomalies (e.g., Down syndrome) and mental disabilities brought on by a variety of reasons known (e.g., oxygen deprivation at birth) and unknown.

It’s the unknown that give me pause in relation to the “more cases vs. better diagnosis” question. I’m not aware of any studies that take an analytical look at the conditions that led to institutionalization.

My hunch? Autism has always been far more prevalent than we’ve ever had the data to ascertain. And they were institutionalized. Today, they live at home; some are placed in foster care. They are publicly educated. They work, often in an appropriately sheltered setting.

Like kids with Down syndrome, they are no longer “gone,” hidden behind the walls of state institutions. The reasons that would have landed them in institutions until relatively recent times have faded into medical and societal obscurity long ago as the institutions were shuttered.

What’s also changed — and this is relevant when diagnosis comes into play — is that some kids were always labeled as different. They may not have been institutionalized as they could get by — and perhaps do well — in school. Today, Asperger’s, which is part of the autism spectrum, enters into the numbers. I think that’s very relevant.

That’s a very long way of saying I don’t know that we’ll ever have a clear answer about “more cases vs. better diagnosis.” This much I know: Vaccines are safe; the diseases they prevent are dangerous, even deadly.

About Elizabeth

I'm a writer and the mother of William and Fergus. Before dedicating my work to children's environmental health, I earned an MA in Cultural Reporting and Criticism from New York University and was a photography editor at The New Yorker. My family is preparing to move to New Orleans, where my husband, an architect, is building us a non-toxic home.

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